Chronic pain affects people across the globe and research aims to improve our understanding of pain and better prevent and manage it. But for research to achieve these goals, it must first be trustworthy.
An international group including scientists and people living with pain has identified a number of threats to the trustworthiness of research. These include a lack of transparency and proper methods, underrepresentation of some minoritised groups, a lack of patient involvement, spin and research misconduct. These issues can affect all stages of research, from early lab tests to clinical studies and reviews, ultimately impacting clinical guidelines and patient care.
Professor Neil O’Connell from Brunel University of London, who led the initiative said. "The reality is, while there are examples of excellent research in pain, too many studies fall short of the standards patients and the public deserve. This has consequences for our science and for the health and well-being of people with pain.”
In a “Call to Action” published in the Journal of Pain, the group introduces a new framework for more trustworthy research that should guide all pain studies. The Enhancing TRUST in Pain Evidence (ENTRUST-PE) framework offers recommendations, practical steps and resources for researchers, institutions, funders, editors, policymakers and learned societies to take immediate action while paving the way for long-term reform.
"Our goal is to promote and support research that researchers, patients and the public can trust. The ENTRUST-PE project is about reinforcing that foundation of trust, so patients can receive care supported by robust evidence."
A major problem within pain research is the exclusion of certain populations, particularly women and older adults, who are often most affected by chronic pain. "Certain populations, like women, racialised groups and older adults, are often left out of studies, despite being among the most affected by chronic pain,” Prof O'Connell explains. The ENTRUST-PE framework emphasises the need to close these gaps to create evidence that truly serves everyone.”
Improving pain research is not solely the responsibility of individual researchers, the group stresses. "Everyone has a role to play to ensure pain research is serving the public interest and needs of people living with pain. From funding bodies to journal editors, professional societies and the public, we are all responsible for ensuring pain research is trustworthy” explains Joletta Belton, a patient partner from Colorado.
In line with international efforts like the Declaration on Research Assessment (DORA) and the Hong Kong Principles, ENTRUST-PE is part of a worldwide push to reform research practices, making evidence-based healthcare more reliable. "People deserve to trust that the science behind their pain treatments is solid and relevant to them," Joletta adds. "When pain research is conducted without our input, or does not represent us, it’s the people living with pain who suffer. This framework is about building that trust."
Prof O’Connell added: “We have specifically undertaken this work to support quality improvement within the pain research community. However, pain is in no way a special case with unique problems. These challenges affect all health research. The framework and its recommendations are applicable and helpful for wider health research.”
The full framework and associated resources are publicly available at https://entrust-pe.org/
'Enhancing the trustworthiness of pain research: a call to action' is published in the Journal of Pain
The ENhancing TRUSTworthiness in Pain Evidence (ENTRUST-PE) network received funding from the European Commission in 2023 (ERA-NET NEURON Consortium)
Reported by:
Hayley Jarvis,
Media Relations
+44 (0)1895 268176
hayley.jarvis@brunel.ac.uk